EVENTS

Cancer Chronicles 19: Eight!

As of yesterday (Friday) at 9:14 am, the pump was off and I had finally finished my eight cycles of chemo. The last two cycles had to be reduced, just to get me through, but the independent IV fluids helped more than anything toward this latter stage. Some people sail right through their initial chemotherapy; others don’t. My friend in colon cancer treatment had such a rough time with hers that it was cut short and she was moved on to radiation. Me, I got pushed back time after time, especially as the experience with neulasta was a very bad one for me. There aren’t any rules for getting through chemo, everyone is different, so if you find yourself in treatment, don’t go thinking there’s something wrong with you or the way you’re reacting to things. It’s not predictable, just take things one cycle at a time.

The last two weeks I had been having one hell of a time with nausea and a low level migraine haunting behind it. I was being good, taking my Zofran and all that, when it turns out that Zofran can, and often does, cause headache. :sigh: It would be so fuckin’ nice if people told you this before hand, rather than two weeks after dealing with shit. Zofran is a standard chemo prescription, so if you’re already prone to headaches, you might want to head that one off at the pass and request a different anti-nausea drug. For the most part, besides the dexamethasone, I found OTC Dramamine to work well enough.

In my infusion suite, there’s a tradition for reaching the end of your chemo – there’s a large bell at the doorway, and you’re supposed to ring it the same amount of cycles you’ve been through. On Wednesday, I went in with a large bag filled with freshly baked brownies, apple crumble, and banana cake for everyone. I was allowed to slip out quietly with no fuss. Sometimes, bribery is a good thing. ;) Walking out that day, I could not get outside the hospital fast enough, it felt as though I was breaking out of prison. When you’re in treatment, it just becomes this endless round of repetitive appointments: Register/Lab/Oncology/Infusion, which not only wear you down, but they take over your life. Everything centers around them.

For all that Wednesday felt like a joyous prison break, I only get three weeks out. My oncologist wants me started on Xeloda (oral chemo) and Radiation on June 20th. I think I’ll be meeting my new oncologist then too. Maybe. Appointments are up in the air. My oncologist is retiring, so I’m getting a new one. Then it’s off to radiation and that particular doctor, who I haven’t seen since all this started. The urge to run away is high again, because everyone I’ve talked to has told me that if anything, radiation and xeloda is much, much worse than chemo. Oh yay. Given how easily my skin burns, I am so not looking forward to that one. Well, all I can do now is try to enjoy my three weeks. It would be nice if we had Spring, or even Summer here, but it’s been day to day storms, clouds, wind, cold, and basic grayness.

Some notes on personal care here. One thing I don’t think I’ve mentioned as of yet: scent sense. There are rules in Infusion suites, such as No Hot Food, and that goes for everyone, including nurses. That’s because the smell of hot foods can trigger bad things in chemo patients, and that goes for all other types of smells, too. If you’re going to be in treatment, or be hanging around with someone in treatment, go smell free. If you can’t manage to give up something scented, like a shampoo, make sure it’s an extremely light scent (absolutely not food based, like strawberry or something), with no throw (meaning it doesn’t extend past your person). Outside of that, no perfumes, and no smelly lotions please. You never know what might set someone off, and give them one of the worst days of their life.

Chemo left me with extremely thin hair, which has been quite the shock, given how thick it used to be. I’ve kept the length, but the thinness, oy. I wasn’t getting any new growth, either. I had read that taking biotin helped with the peeling nails business, and while I’m not big on supplements, figured it couldn’t hurt. I’ve been taking 5,000 mcg a day for a while now. Didn’t do a damn thing for the nails, but my hair started growing again, albeit very slowly. My hair had also gotten so dry it was brittle, no moisture anywhere. Conditioners did not help. IV fluids did help somewhat, but my hair felt and looked damaged beyond repair. I came across this shampoo at Big Lots:

L’Oréal Extraordinary Oil. Unbelievably, it helped. Really helped – for once, my hair felt and looked more like it should, with a nice sheen instead of brittle dullness, and it felt smooth and a bit moist. Not enough, but better. Continued use with conditioner has been getting it back to normal. It has a Sandalwoodish scent, which is light, and doesn’t last, so it was safe enough for infusion. It helped enough that I can use a brush now and then; for most of chemo, I had to give up a brush and go with a pick and comb. That’s another thing – don’t stubbornly cling to your usual brush or other method of dealing with your hair, use whatever causes the least amount of damage, and pulls the least amount of hair out – you’ll lose enough of it as it stands. When chemo doesn’t cost you all of your hair, it will take around 50% of it, at least. I’ve lost more than that.

Voyager sent me the Cloud 9 Naturally for badly damaged skin, and that stuff is close to a miracle. I had very deep cracks in the soles of my feet from the 5-fluouracil, and applied this, put on a pair of socks, and went to bed. Next day, they were almost completely closed. In dealing with the 5-fluouracil loss of fat pads in the fingertips, the Curel Itch Defense lotion was great (and still is), and IV fluids probably helped the most with that little problem.

That’s all for now. I’m going to go off and pretend all this crap is over.

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Comments

You’re done with your chemo? That’s fantastic! I laughed when I read about the bell. We have one in our Chemo Suite too. Every now and than I’ll be laying there getting an infusion and will hear the bell ring. I did bring chocolates for the staff during Nurse’s Week and always seem to get a private room :-)

I can’t believe you made it through everything and kept your hair! I was just about completely bald after cycle 5. I’m still totally bald. My study is ending in a few weeks and if my tumor isn’t as small as my oncologist wants -- she may put me on Adriamycin and Cytoxan. If that happens I wont have hair until 2019! I’ve been told I have a “nicely shaped head” -- no weird lumps or bumps. Now that’s something weird to be proud of.

I’ve heard different things about radiation. Mainly -- it’s super fast -- in and out in less than 1/2 hour. I have heard about burns, also. I think we get meds for that -- but I really don’t know. I can only think so far ahead. My radiation probably wont happen for months.

I hope this upcoming 3 weeks of respite strengthen you and bring you much happiness.

I’m done for now! There will be more later. The xeloda first, then a final four cycles. Oh, I am so sorry about your hair loss. It’s just the luck of the draw -- the cytotoxins for colon cancer don’t wipe it all the way out, just part way. Oh gods, no hair for another year? That seriously sucks. A well shaped head matters -- mine isn’t, and I’d hate to have it completely exposed.

Yes, radiation is fast. My doc told me it’s 15 minutes, all told. Probably close to 30 by the time you’re dressed again and all that. It’s a right pain for us, because it’s every day, so that’s an hour trip into town for 15 minutes of treatment, every day for a number of weeks, and an hour back.

I hope you get through your chemo quickly, and at least have a good respite before moving on to the next bit.

Thank you all! I’m glad to be finished, but still feeling exhausted. I need to get stocked on new stuff now, mainly Aquaphor and 40% urea cream to deal with burns and the ongoing 5-fluouracil (xeloda), which is responsible for the nastier side-effects. And I’m going to need a different anti-nausea drug. Christ, I’ve got enough bloody Zofran for about 3 years, too.

About the bell…yeah, I don’t mind if someone wants to do it, but I really wish whoever had that silly idea in the first place had kept their mouth shut. I didn’t feel celebratory, just wanted to flee.

Hi, me again. Update: we are moving from Seattle to Phoenix, the Mayo Cancer Center is taking over, team headed by a Dr Ho who is not only my oncologist but my cancer is his research topic. And already some interesting happenings during our baseline scans. I’ve been fighting this for two years now, three different chemos and looking for the next one (last one was killing me faster with the Diarhoa). This is my FB post on what happened:

Life’s a surprise, isn’t it. Even to highly versed doctors.

I am transferring my care to the Mayo Cancer Center in Phoenix, and part of that is them taking full bio baseline scans. And Peeks. And pokes. And cop-a-feels. They are very thorough. So I have been spending a lot of time there. Forgotten how many specialty doctors etc I’ve seen. Thursday was full body CT and bone scans. First infuse the radio-isotope, then the CT contrast, then the CT scan, then the bone imaging, then lunch, then ultra-sound imaging of my legs.

I thought cancer was, on the scale of hours, a relatively slow disease. Something is seen, deliberations are made, further peeks and pokes and puzzling ensue, a treatment strategy is devized, and some weeks (if lucky) later after discovery treatment begins. Apparently not always the case.

In December 2016 they discovered a tumor nestled inside my T7 vertebra, causing neuropathic pains. In Feb it was radiation-burned away. So all good, pain stopped, everyone relaxes. That was considered a “fast” response, and normal find-a-chemo-that-works resumed.

So, to Thur, as I was being wheeled out of the bone imaging, Ann was finishing a phone conversation, and said to me “Dr Ho says get to ER immediately”. (Dr Ho is my lead specialist, a researcher on my brand specifically.) No mention of why. But hey, we’re already in a (village sized) hospital, ER is in the other one 10 miles away, but off we go. T7 is back. I mean, reeeaally baaack. CT tech analyzer person spotted it. (As did the first time; Dr is reliant on the CTA to point out features of interest). And they called a “Core Compression” code on it. Means imminent quadriplegia, from the fact of the ER call. It is 12 noon. I get an MRI added to the list, legs off. By about 5pm I’m lying in the burner. Same day. Using the same 5 pixel targeting tattoo. Alternative meant essentially cutting out the vertebra and then reconstructing it. The tumor will only come back again. Risk of qp the same. The usual use of radiation assumes chemo is going to keep it from coming back, but not in my case. Because all the other tumors are still around to spawn. Not found that magic bullet yet.

Wife noticed improvement in gait immediately after we got home. Friday burn 2, Mon and Tue last two burns. Wed back to Seattle for two weeks, then back to Mesa AZ. Would like to see as many friends in the BI area as possible before leaving, I am not expecting to be able to come back. Unless -- Hope we get the right chemo soon. And now I know a cancer event can warrant a code call for ER. That fast. Pain Control makes things easier, for the moment. But masks the underlying problem without accompanying monitoring. Until it might be too late. A delicate balance.

Oh gods. I can only imagine how you both felt at the news. This is shaking and changing your life to the core. I hope the move goes as smoothly as possible, and that an effective regimen of cytotoxins will be found so you can scream “fuck cancer forever” to the skies. You’re both in my thoughts.

Congratulations Caine. You are a third of the way through. Next is Chemo and RT and then lastly surgery. I never heard of Damage Control before this. It’s a Canadian product; I expect that’s why. It has all the good heavy barrier oils in it, Shea butter, cocoa butter and jojoba for starters. Their website also says it’s antibacterial; I wonder what else is in there. Keep using it until after the skin has healed, and start using it again a few days before starting the Xeloda. The scent thing is very serious, yes. I haven’t worn any scent in almost 20 years. Even my deodorant is either talcum scented or completely unscented. I think the bell is wretched. As if being ill isn’t enough of a burden and a stigma. I know some practices give a “diploma” or certificate for completing therapy. Which is horrible horrible reminder if the patient relapses and needs further treatment. You could try Benadryl for nausea, which is OTC, or ask for a prescription for Compazine and/or Phenergan. Both of those are structurally similar to Dramamine but more potent. Compazine is still occasionally used to treat headache, but you never know how you’ll react. Please rest and eat and hug the Rick and doggie.

You could try Benadryl for nausea, which is OTC, or ask for a prescription for Compazine and/or Phenergan. Both of those are structurally similar to Dramamine but more potent. Compazine is still occasionally used to treat headache, but you never know how you’ll react.

Oh thank you, I’ll definitely look into those. The Zofran is off the table, and the nausea was difficult to handle this last time out. As for the bell, I’m pretty sure a lot of people manage to slip right by the thing. Personally, I was horrified when I first saw it in action.

Please rest and eat and hug the Rick and doggie.

Done, done, done, and done! I’m going back in on Wed. for IV fluids, I’m pretty out of it still, and constantly exhausted.

*hugs* Caine. I hope you can make the most out of these three weeks and I wish you good luck for the next phase.

My mother didn’t get skin burns from the radiation, the main side effect was a complete loss of bladder and bowel control for a while (the radiation was aimed at the bone met in her ilium, so it was in the pelvic area) with every trip to the bathroom accompanied with a lot of pain. Nothing you haven’t had to deal with already, I’m sure, but those were difficult times for us. Right now all her tumors are under control with the Osimertinib alone, but we know resistance is around the corner. It’s so weird because right now everything is fine, she’s almost like she was pre-diagnosis, but we know that day will come when the bone pain or the cough will be back, whichever comes first, and everything will start all over again except resistant to yet another drug, and much less therapeutic options. I know the clock is always ticking, but hearing it so loudly is wearing me down right now.

I know the clock is always ticking, but hearing it so loudly is wearing me down right now.

Oh, I feel for you both so much. It’s so damn hard. I’ve had just this one phase of treatment so far, and I really, really don’t want to go back. Just so tired of it all, tired of it consuming my life. It has to be so much more worse for your mom and you.

As for the radiation, I know a number of people who got zapped in the same place I will, for the same type of cancer, and I’ll get burned. Badly. I’ll be picking up Aquaphor in town on Wednesday. I hope to hell it doesn’t affect my bladder, I’m already having trouble with that -- I don’t get the early warning signals anymore, so by the time I realize I have to piss, it’s damn near too late to make it to the lav.

As for the bell, WTF? Certificates? Ugh. No, best to leave with quiet, unobtrusive dignity. As fast as possible.

I’m with you, all the way. I don’t want to be told how I should be feeling, and all I wanted was to get the fuck out of the hospital. I have to go back for IV fluids this week, and I really don’t want to go back there.

As for the radiation, I know a number of people who got zapped in the same place I will, for the same type of cancer, and I’ll get burned. Badly.

Oh well, at least you’ll be prepared, I hope it’s not too bad. I can imagine how tired you must be feeling and trust me, as far as side effects go I can tell you’ve been having it much worse just from what you’ve told us. In our case it’s the emotional side of things that hurts more, there isn’t much hope to cling to. I think the positive thinking bullshit is even more taxing on stage 4 patients and their families, but it seems very few people understand that. Some do, though. I never forget the words of a lab technician who just told me “not much we can do, just pull ourselves through, enjoy the little things and moments and prepare our hearts“. That is somehow much better to hear than the standard “oh, you say relapse is sure to happen, but you never know, maybe it will only happen in her 80s or something, you have to think positive!” silliness. It’s better because it’s honest.

Hoorah for completing the chemo! That is cause for celebration, and I hope the three week break from rounds of treatment will be restorative and free of new side effects. I can’t imagine smells being even more intrusive, what a horrible thing. Some colognes are already pretty noxious just being in the same room, but having food smells also attack you and induce nausea and migranes would make eating and going out in public a dreadful experience.

Would wearing a bandana you could use to cover your nose help? It’s been manure spreading season here, and there have been a couple occasions where pulling my shirt up to my eyeballs and breathing through it was the only way to prevent retching when the wind came from that direction. (thank the FSM for the rains ending the stench)

In our case it’s the emotional side of things that hurts more, there isn’t much hope to cling to. I think the positive thinking bullshit is even more taxing on stage 4 patients and their families, but it seems very few people understand that.

You really can’t overestimate the emotional and mental impact from cancer. It’s a life changing event, and it’s traumatic as hell. With physical side effects, you at least know that they will stop, one way or another, eventually. What happens to your head, that doesn’t go away. I loathe the way it just consumes your life, everything centers around the damn cancer. There are a lot of people who come in to assist patients in oncology & infusion, many are retired nurses, but all of them were cancer patients. Talking with them, they always know how long it’s been. 25 years, more? It’s still very upfront and present in their heads. And, y’know, you have to go in for tests every year, then every 5, whatever, so you aren’t allowed to forget, even if you could.

I can only imagine how much heavier the impact is at stage four. The reality you have to face, and trying like hell to lay metaphorical cushions down before the blow strikes. The mere fact that the positivity ghouls can even find a way to pester stage 4 people…Christ, they need to be smacked. It just doesn’t help, in any way.

Some do, though. I never forget the words of a lab technician who just told me “not much we can do, just pull ourselves through, enjoy the little things and moments and prepare our hearts“.

And there’s the tough part. Even when you’re prepared, it’s not enough. Never can be, but all we can do is our very best, and take each tiny moment that’s good, and hold it close.